This weekend was special. A close friend and colleague, Jessica, turned 30. She chose to spend that day giving back. Nearly 70 people took to the streets (and bars) of Hoboken, NJ to raise money and awareness for Jason and Justin Leider and their foundation “Let Them Be Little X2“. Jessica produced a video with the boys and their parents telling the world about their rare genetic condition (1 in 100,000 births) called Mucopolysaccharidoses-2 or Hunter’s Syndrome.
Children with this condition often have many health issues including developmental delays, premature brain failure, respiratory system problems, the inability to walk and recognize their surroundings before the age of 12. The sad truth is that the boys probably won’t live past 15 years old. So their parents are getting the word out there and Jessica was kind enough to share her special day with them to raise money for their foundation.
Let Them Be Little
The Leiders want the best for their boys in the little time they have here on Earth.
They are allowing the boys to do whatever it is that makes them happiest and “lets them be little”. They have visited a firehouse, ridden on a firetruck and were even named Police Chief and Police Deputy for the day in Elmwood, NJ. Quite a feat for these little guys! It’s really beautiful to see the smiles on their faces.
A Beautiful Bucket List
A similar story caught my eye this weekend about a little girl named Avery Lynn Canahuati from Texas. She was also diagnosed with a rare disease that will cut her life short too soon. She’s 5 months old now and probably won’t live past 18 months. Her condition is called Spinal Muscular Atrophy Type One. It attacks the muscles of the body including the respiratory system. Like the Leiders, the Canahuatis are making the most of the time they have left with their little one.
The Canahuatis have crafted a “Bucket List” for their daughter and are helping her cross it off one by one. There are simple things on it like:
- Make cupcakes
- Throw a party and invite all my friends and family
- Stay up past my bedtime
- Sit up
This is the sweetest bucket list I’ve ever seen. It really makes you step back and think about all the fortunate things going on in your own life. Things that we take for granted every day are milestones in these kids lives. Be grateful for your health and put “help a less fortunate person” on your own to-do list just like my friend Jessica did.